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Proposal Action Research Mind Mapping

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					                       Bulkley Valley

                Fetal Alcohol Syndrome

                         Community

                 Mind Mapping Project




            Conducted and written by Bobbie Adkins
                        Smithers, BC
                         June , 2000




This project was funded by the North West Community Health Services
                    Society Grants to Communities.
2
                     Table of Contents

Acknowledgments……………………………………………………..page 4


Introduction…………………………………………………………….page 5


Mind Mapping Sessions………………………………………………. page 7

    How To Do a Map……………………………………………...page 7

    Advantages of Mapping………………………………………...page 7

    Smithers Mind Mapping Sessions………………………………page 9

    Response to The Mind Mapping Sessions in the
    Smithers Area…………………………………………………..page 10


Final Summary Meeting………………………………………………...page 38

     The Meeting…………………………………………………….page 38

     Five Responses to the FAS Question…………………………..page 42

     Summary of the Five Presentations…………………………….page 46


Postcard Survey………………………………………………………….page 47


Summary…………………………………………………………………page 52


Financial Statement……………………………………………………….page 53

     Budget……………………………………………………………page 53

     Budget Notes…………………………………………………….page 54


Works Cited………………………………………………………………page 55



                                                             3
                             Acknowledgments




        This has been a community project and many thanks go out to everyone in the
community who participated in the mind mapping sessions and the postcard campaign.
Special thanks go to Marlene Thio-Watts for instruction; Leslie Ford and the Town of
Smithers for managing the accounts; Elaine Collison-Baker for scanning and to the
Smithers FAS Prevention Committee, specifically Cheryl Wickson for her vision and
faith, Sarah Moreau for constant support and reassurance, Amanda Arwen for gifts to the
Community Mind Map and accounting assistance, Kathy Davidson, Judy Kerr and
Rosemary Plummer for help at the Community Mind Map and Mary Etta Cloud for her
regular column reports. Thank you to the agencies and groups who participated in the
mind mapping sessions: the Child Development Centre, Constituency Office for Bulkley
Valley Stikine, Dze L K’ant Friendship Centre Society, downtown merchants, Healthy
Babies-Healthy Families Mother’s Time Out Group and Teen Group, Healthy Babies
Pregnancy Outreach Programme, mental health workers, Ministry for Children and
Families, Dr. Clare Moisey, the North West Community Health Services Society,
Smithers Community Services Association, Smithers Foster Parents Group, Smithers
Senior Secondary School Family Management class and The Zone and to those
individuals who helped organise their agency’s participation: Jane Boulton, Nancy Cody,
Allan Doll, Judy Kerr, Ruth Milne, Wanda Nikal, Beth Richardson, Cindy Savage, Suzie
Soman and Diana VanTunen. Thanks also to David Walford and Steve Monds of
Mountain Eagle Catering; Alison Lukyn for babysitting and to Healthy Babies Pregnancy
Outreach Programme at Dze L K’ant Friendship Society for office space and office
equipment. Finally, special thanks go to Nathalie Brassard and Marilyn Morrison for
sharing office space and to Richard Dominic for never getting flustered no matter how
many times I wrecked the photocopy machine.




                                                                                      4
                                    Introduction

     The initiative for this project came from the Smithers Fetal Alcohol Prevention
Committee in keeping with their mission statement:
     We acknowledge the value of all people and believe every person has the right
     to the highest quality of life. Therefore, we are committed to advocating for
     FAS prevention, support, and resources that promote changes to strengthen
     individuals, family groups, and communities in the Bulkley Valley.

        This committee was formed in 1997 and since then has done a number of projects
in the community including:

       •   Yearly checks at the local bars to ensure they are displaying signs of the
           Smithers bylaw #1148 which states: Beware. Drinking beer, wine, coolers
           and any alcohol during pregnancy can cause birth defects.
       •   Advertising campaigns on Mother’s Day and during the Christmas season
       •   Producing the “Please don’t drink if you are pregnant” stickers
       •   Attending the Fall Fair parades
       •   Mall displays during Alcohol and Drug Awareness week
       •   Radio interviews during Alcohol and Drug Awareness week
       •   Newspaper articles every six months
       •   Building a resource library
       •   Handing out awareness pamphlets and discussing fetal alcohol syndrome on
           FAS Awareness Day
       •   Writing the proposal for the Needs Assessment project, getting the funding
           and hiring a coordinator
       •   Hosting a theoretical strategic planning session with Carol Legge in October
           1998
       •   Hosting a workshop with Dr. Asante in October 1999

        One of the goals established by this committee provided the basis for the issue
identified for study. This goal is in the category of research and states, “To ensure that all
suggestions for changes in the Bulkley Valley are based on accurate community based
research to determine the community’s perspective on the needs, concerns and possible
solutions around FAS.” The committee anticipated that this project would accomplish
the following:

       •   It will provide a needs assessment for those affected by FAS
       •   It will provide an evaluation of the impact of FAS on the community as a
           whole



                                                                                             5
They expected the benefits would be:

       •   It will raise the awareness of FAS issues in the community
       •   It will develop a common understanding of FAS
       •   It will define a community plan of action on How to address FAS
       •   It will provide a document that will help in the seek for further funding

        The committee chose the mind mapping process as the most efficient, inclusive
and economical means of obtaining an effective community response. They expressed the
idea that, “The community based initial research will illustrate themes of FAS related
community problems that need to be addressed. With the mind mapping results and the
support of the community, the committee will be in a better position to access funding to
deal with the prevalent issues. We believe this project will allow the community to
become involved in a participatory capacity with the ongoing work of the Smithers FAS
Prevention Committee.” They also state “ The outcomes will be measured by the
mobilization of the community around the issues of FAS. The attendance at the mind
mapping groups, the number of people involved in the Smithers FAS Prevention
Committee will be indicators of the success of this project. The ability to access funding
for specific projects will also be a measure of the success of the project.”

       Based on these recommendations and goals of the Committee, the Mind Mapping
Sessions began. There was also guidance from the Prince George Fetal Alcohol
Syndrome network who went through this process in their community (Grounded in
Hope, 1998). Key people in agencies throughout the community organised the people for
the Sessions within their agencies. Nineteen Sessions were planned and seventeen were
conducted.

       The results from these Sessions were summarized and a Meeting/Luncheon based
on these summaries was held with representatives from each Session. Thirty-five people
from a wide cross-section of the community attended the final meeting. The results from
this meeting form the basis of the community recommendations.

        Although the results from the Mind Mapping sessions are presented in detail the
participants have not been named in order to maintain confidentiality.

       A postcard campaign was also conducted. Four hundred stamped and addressed
postcards were distributed throughout the community. These cards asked the question ,
“ What does Fetal Alcohol Syndrome mean to you?” Fifty-two (13% return) responses
were received and these are summarized as another part of the community response.




                                                                                          6
                          Mind Mapping Sessions
        Mind Mapping is a participatory action research process. It is essential for the
community to participate. For this reason it was chosen as the research process for this
project. The process has been well defined by the Chris Leischner, 1999 while working
with the Prince George FAS Network. This description follows below.

        Mind Mapping is a tool for assisting and enhancing many of the styles of thinking
and learning that we are required to do in our work. Though it has been primarily used as
a learning skills tool, we have developed it as an information gathering tool where ideas
can be elicited and then utilized to further develop a community building solution
focused process.

                                   How To Do a Map

       See the sample map shown in Figure 1.

1. Print in capitals for ease of reading and to encourage you to keep the points brief.
2. Use unlined paper (banquet paper works well and is inexpensive) since the presence
   of lines on paper may hinder a non-linear process. (If you must use lined paper turn it
   so the lines are vertical).
3. Use paper with no previous words on it.
4. Write the main idea in the middle of the page – it may be a word, a phrase, or a
   couple of juxtaposed ideas.
5. Put related ideas, words, or phrases around the main ideas using lines that radiate out
   from the central idea like spokes. When you get a new idea start again with a new
   spoke from the centre.
6. Go quickly, without pausing – try to keep up the flow of ideas. If you are using this in
   a group process, do not allow the members to ‘process’ the ideas, to make comments
   or to explain, just get the ideas on the paper. Do not stop to decide where ideas should
   go. (Ordering and analyzing are ‘linear’ activities and will disrupt the Mind Mapping
   process).
7. Write down everything that is thought of without judging or editing – this disrupts the
   flow.
8. You may want to use colour coding to group sections of the map.
9. One technique of Mind Mapping is to then further explore each idea with related
   ideas branching out from those ideas.


                                Advantages of Mapping

       Mapping is sometimes seen as a form of brainstorming. Both of these techniques
work to encourage the generation of new materials, such as different interpretations and
viewpoints. However, Mind Mapping relies less on random input and more on providing



                                                                                           7
Figure 1. A portion of a sample Mind Map


                                           8
opportunities for fitting ideas together. In this format no ideas take precedence and all
ideas are connected to the centre.

      Here are some advantages that will become clearer to you as you experience the
Mind Mapping process:

1.  It clearly defines the central idea by positioning it in the centre of the page.
2.  It helps you to clearly indicate the relative importance of each idea.
3.  It assists in ‘seeing’ the links among the key ideas more easily.
4.  It positions all your basic information on one page.
5.  As a result of the above it assists with making recall and review more efficient.
6.  You can add new information without messy scratching out or squeezing in.
7.  Because it does not lock the information into specific positions it allows you to see
    the information in different ways, from different points of view.
8. You can begin to see complex relationships among ideas.
9. It provides a foundation for questioning, encourages discovery and creativity by
    showing up contradictions, paradoxes and gaps in material.
10. Mind Mapping is a relatively easy technique to teach and implement. For this reason
    it can be utilized quickly, with different groups of people, ad produces abundant
    information.


                            Smithers Mind Mapping Sessions

    The materials used for the Smithers Mind Mapping sessions are shown in Figure 2.
The ink from the fine tipped felt pens should not mark through the paper. The red ink pen
can be used to write the names of people who want to participate further directly onto the
map and be visible. The reference book has all information at hand and a place to record
names of participants and any important details or questions from the session.

       To conduct a session:

       •   Plan and confirm the session with a key person in the group or agency
       •   Arrive early
       •   Set up the room, large table in the centre of the room with chairs pushed away
       •   Roll the banquet paper or newsprint onto the empty table
       •   Open session with introductions (record names) and a brief explanation of the
           process
       •   Find central focus of the group
       •   Conduct Mind Map
       •   Discussion, get names of people interested in particular issues (write in red )
       •   Explain continuation of process
       •   Hand out postcards




                                                                                            9
           Figure 2. Materials used to conduct Mind Mapping Sessions: roll of
                     banquet paper, reference book, scissors, elastic band, black
                     fine tipped felt, red ink pen, blue ink pen and blank postcards.



            Response to the Mind Mapping Sessions in the Smithers Area

       There were seventeen successful Mind Mapping sessions conducted in the
Smithers area. There were actually two more scheduled and a number under
consideration but these did not work out. It is hoped that these missed groups can be
contacted later in the next stage of this process.

        Each of the Mind Maps was summarized as written with no attempt made to
clarify and thereby possibly change intent of the comments. Neither the names of the
agencies nor participants are included in the summaries that follow in order to maintain
confidentiality.



                                         Group I

                    Central Focus: INTEGRATED COMMUNITY

Subjects              Topics, issues and solutions from your map bubbles

Women’s Issues        Prenatal care
                      Support
                      Employment/ wage equity
                      Cultural inclusion



                                                                                           10
Women’s Issues      Counselling, especially on partner issues
                    Removal of blame

Education (awareness & prevention)
                     Awareness
                     Elementary school FAS education
                     Public Health Nurse in schools
                     School board support


Education (support & working with FAS)
                     Integration
                     Youth programmes
                     Community participants/ community issue
                     School support for FAS

Support             For parents and family
                    Need an FAS worker in the community*
                    Dental care


Diagnosis           Statistics
                    Avoid labelling/ stigma
                    Understanding
                    Positive/ acceptance
                    Countering prejudice

Judicial System     Youth programmes
                    Family justice forums
                    Understanding

Day care            Social integration
                    Observe postnatal motor delays




Alcohol             How to drink responsibly
                    Media support
                    Create culture of nonuse/attitude
                    Alcohol and drug prevention

FAS Campaign        Show people the importance of FAS
                    Organised campaign
                    Partnerships/high profile groups


                                                                11
FAS Campaign      Publicized
                  Process/address issues
                  Nonconfrontational
                  Build support structures
                  Buy into community issue
                  Fun/music/easy involvement
                  Solutions

Media             Positive

Services          Transportation
                  Alcohol and drug counselling
                  Pregnancy support
                  Bring services to clients



            General Statements related to FAS made by your group:

                  •   Blame
                  •   Isolation
                  •   Marginalization
                  •   Barriers
                  •   Poverty
                  •   Funding
                  •   Self esteem
                  •   Stigma
                  •   Mental health
                  •   Barriers
                  •   Spirituality



                                Group II

                  Central Focus: PREVENTION

Subjects          Topics, issues and solutions from the Map bubbles

Education         Awareness of drinking during pregnancy
                  Target high schools
                  Workshops
                  Training
                  Information/written resources



                                                                      12
Outreach               Pregnancy Outreach Programmes
                       Pregnancy Planning
                       Not Drinking
                       Alcohol and drug counselling


Support                Individual
                       1 on 1
                       Groups
                       Mothers
                       Those affected
                       Healthy baby workers
                       Certified Alcohol and drug counsellors
                       Dedicated workers
                       Drop ins
                       Family support/ go out into the community

Employment             How to get a job
                       Job search/ career/ resume/ cover letter/ presenting self
                       Employer awareness

Community              Community accountability programmes
                       Alternative justice resolutions
                       Consistency

Alternatives to drinking
                       Exercise
                       Cook healthy
                       Role models
                       Support groups
                       Money for activities
                       Native cultural alternatives

Advertising            Graphic posters and ads
                       More symbolic/ tangible in association with FAS
                       Radio/ cable/ posters/ newspaper/ hotline

Residential Schools    Power/ control/ modelling
                       Lack of parenting skills/ family breakdown
                       Government and bribery
                       Children can’t speak
                       Lack of communication/ can’t express themselves
                       Sexual abuse/ drinking with the priests



                                                                                   13
Residential Schools   Show support by counselling
                      Help find a voice

Assessment            Awareness/ community/ courts
                      Money for doctors for assessment
                      Awareness of FAS factors

Reserves              Need to change
                      Real world
                      Anger/ hatred/ jealousy/ negative
                      Frustrating
                      Band politics/ outrageous rules
                      Chiefs lead families


                General Statement relating to FAS made by group:

                      •   HIV
                      •   Birth control misunderstood/ unprotected sex
                      •   FAE/ not obvious except behaviour
                      •   FAS/ behaviour/ small frame/ labels/ slow/ stupid/ older/ steal/
                          slow development/ mental deficiencies/ illness/ problem with
                          brain/ physically disabled
                      •   Struggle
                      •   Challenge
                      •   Lack of communication




                                        Group III

       Central Focus: COMMUNITY BASED HOLISTIC APPROACH


Subjects              Topics, issues and solutions from the Map bubbles

Prevention            Teach kids to make personal choices that affect their lives early in
                      life

Diagnosis             Tools? Questions?
                      Who has FAS? Not aware
                      Recognition
                      Support


                                                                                         14
Diagnosis             Can form a community strategy for people identified
                      Assistance at a young age
                      Acknowledgment
                      Referred

Resources             Educational material
                      Referrals
                      Diagnostic tools
                      Services/ programmes
                      Structured environment

Research              Key


Residential schools   Past/ anger/ blame/ guilt/ abuse
                      Future/ healing/ move forward
                      Strength
                      How to heal

Ongoing funding       Inclusive/ working together/ community plan
                      Communication
                      Different groups/ different parts
                      Not just project-based

Alcohol               Don’t condone drinking
                      First Nations more susceptible to alcohol
                      Alcohol based culture/ “Drink after work”
                      Underage drinking/ lack of self confidence
                      Lifestyle/ drink/ sex/ pregnant
                      Peer pressure


Support               For families
                      Daycare
                      Support groups
                      Library
                      Care plan
                      Stimulate parts of the brain

Pregnancy             Don’t drink during pregnancy
                      Pregnancy planning
                      Planned Parenthood




                                                                            15
Public Health           Population health
                        Prenatal information
                        Helping families
                        Community development experience


                    General Statements relating to FAS made by group:

                •           Cycle/ FAS/ drink/ pregnancy/ addictions/ denial
                •           Guilt/ blame/ lack of understanding
                •           Punishment
                •           Media/ alcohol focused




                                         Group IV

                               Central Focus: INCLUSION

Subjects                Topics, issues and solutions from the Map bubbles

Awareness               Education
                        Schools
                        Fit student needs
                        Different learning needs
                        Doctors
                        Judgement/ preconceived notions

Advertising             Warning signs
                        Bar signs
                        On bottles
                        Not fun or benefits

Diagnosis               Recognition
                        Relief

Communication           Is key*
                        With general public
                        May deal with someone with FAS

Support                 Referrals
                        Resources
                        Learning needs
                        Developmental needs


                                                                               16
Education                Someone to work with them
                         Community
                         Awareness

Pregnant Moms            Support workers
                         Harm reduction

Money                    Where it is needed

Responsibility           Fathers
                         Parents
                         People in power

Lifestyle                Parenting skills


                     General statements relating to FAS made by group:

                 •          Slower kids
                 •          Stress
                 •          Misinformation
                 •          Preventable
                 •          Anger
                 •          Lack of skills
                 •          Client/ all ages
                 •          Crime
                 •          Grief
                 •          Guilt/ blame
                 •          Socioeconomic
                 •          Discrimination




                                            Group V

                                Central Focus: LIFE CYCLE


Subjects                 Topics, issues and solutions from the Map bubbles

Education                Schools need to participate
                         Prevention education in schools
                         Men need to know



                                                                             17
Education             Educate kids about FAS
                      Remove targeting
                      Forgiveness
                      Start people talking

Money                 FAS ignored because of lack of money

Prevention            Ban alcohol commercials
                      Warning labels
                      Liquor stores need signs

Parenting skills      Daycare
                      Childcare

Assessment            Awareness/ recognize signs
                      Acknowledge condition
                      Awareness of reasons for behaviour
                      Understanding

Structured support    Street people
                      Social support
                      Support workers
                      Treaty offices need to address problem on reserves

Residential schools   Not only a Native problem
                      Integrated community healing process
                      It’s time to recover
                      Healing pole at SSS
                      Friendship Centre is a beacon/ colourblind

Money                 FAS ignored because of lack of money

Research              Determine physical results
                      What are other countries doing?
                      Precise amount of alcohol
                      Universities need to stop stupid research
                      Research alcohol/ prevent addictions
                      Does Desipramine work?

Justice               Educate judicial system on FAS
                      Jail / support on release/ daily structure/ gentle rhythms
                      Jail is not a suitable consequence




                                                                                   18
Community understanding
                   Community based programmes
                   Not regional programs

Drinking                 Teen rituals/ drinking is part
                         Abortion is better than FAS

Focus on gifts           Overcome negative aspects

Respite                  To caregivers
                         No cost

Employment               There are lower skilled jobs
                         Recycling/ catering/ shredding

Home support             Poor housing/ poor environment
                         Need a place to go
                         Meeting place/ crafts/ laundry/ washing facilities/ cheap lunch
                         Need decent standard of living

Services                 Lifetime
                         Free
                         Burns Lake model
                         Adult life skills

Groups                   Integration into social groups/ eg Cadets
                         Busy in good things

Doctor                   Trained
                         Bring up subject of FAS to every pregnant woman
                         Assessments


                     General statements relating to FAS made by group:

                 •    FAS is a lifelong limitation
                 •    Want healthy babies
                 •    Cycle
                 •    Frustration/ depression/ hopelessness/ blackness
                 •    Low self esteem




                                                                                           19
                                       Group VI

                    Central Focus: PREVENTIVE EDUCATION

Subjects             Topics, issues and solutions from the Map bubbles

Support              Pregnant women
                     Families/ before and after birth
                     Expand programs/ eg Pregnancy Outreach Programme

Education            Factual
                     Public
                     Awareness
                     Breakdown stereotypes and stigmas
                     Remove mother’s guilt
                     Teacher training

Cultural             Lack of public places to socialize/ alcohol free
                     Need alcohol free events and programmes

Alcohol              Zero- tolerance

Money                Given to foster parents but not natural parents

Medical Intervention Accurate and early identification

Government           Social cures are not the government priority
                     Support/ more cost effective than the costs to court and medical
                     system
                     How to get through to their accountants

Schools              Need teacher training
                     Counsellors do administration
                     Not set up to do social work
                     Only 1 alcohol and drug worker in the whole system
                     Teachers don’t continue on as students move through system

Community            Acceptance/ Raise level of awareness of all people and ability to
                     respond
                     Church support
                     The Zone
                     Need a Rec. Centre*
                     Community systems/ anything that helps us take care of one
                     another
                     Know what services are available


                                                                                         20
Merchants              Consumers’ world
                       Merchants are in public forum
                       People with agendas
                       People lean toward issues that touch their lives and families
                       Priorities are consumer demands, government regulation and trying
                       to keep up with the electronic market
                       Are constantly asked to support all causes that are in the
                       community and pick their “favourites”




                   General Statements relating to FAS made by group:

               •    FAS is a symptom of how we deal with the disadvantaged
               •    Regular system doesn’t meet the needs of FAS kids (or any other kids)
                    / hope they disappear/ end up on the streets/ poverty
               •    When damage is done, what can you do?
               •    Teen pregnancy high/ denial factor
               •    Institutions become the extended families



                                        Group VII

                          General statements relating to FAS:

•   Needs recognition and proper intervention
•   It’s been around a long time
•   Don’t drink when you are pregnant
•   The cycle can be broken/ there is great hope
•   More government is required
•   No known safe level/ avoidance is best
•   Your baby comes first/ think of him or her before you drink
•   Values in the home
•   Don’t drink extensively at home
•   Moderation has got a better taste
•   Totally preventable
•   An unasked for inheritance/ dissembles a life before it can begin. A preventable
    consequence/ lets work together to prevent FAS and heal its victims
•   Break and addiction/ not a heart
•   Employer can help by training workers
•   If school children aren’t diagnosed there is no funding
•   History of parents is delicate


                                                                                       21
•   Offer counselling (drug and alcohol, financial, marital…) at work site
•   Educate managers about FAS
•   Routines are important
•   Workshops to prevent FAS and help families
•   Need to know about what it is
•   A secure home on a farm/ safe and happy
•   Foster parents help keep FAS kids out of trouble
•   Is a drink now worth your baby’s potential?
•   Don’t you want your child to be the best it can?
•   Education will help lead to prevention
•   Education of parents before pregnancy
•   How to stop boozing/ very difficult to do
•   Quit drinking during pregnancy/ anytime is better
•   Church, discipleship and training centre for FAS people
•   The cost of alcohol abuse is too high
•   Treatment/ people can’t always get it
•   Follow-up to treatment
•   Pregnant women party even though the information is out there
•   Bartenders serve pregnant women
•   Women should avoid drinking, smoking and caffeine
•   You have to love and care and treat FAS people with respect and get to know how to
    handle them
•   God loves you
•   Prison/ correction institutes/ kids with FAS/ 1 kid never got out of prison
•   Put a raw egg in a glass of alcohol/ watch the edges cook/ I told my daughters that
    this would happen to their babies brains if they drank during pregnancy




                                        Group IX

                              Central Focus: ALCOHOL

Subjects              Topics, issues and solutions from the Map bubbles

Prevention            Need recreation
                      AA
                      Counselling

Support

Guys                  Need to learn what women go through during pregnancy so they
                      can offer support


                                                                                      22
Guys                 Not drinking/ keep stress down
                     Maybe kitchen classes
                     Awareness/ understanding

Diagnosis

Schools              Teachers should be aware
                     Need to give support to break cycle

Schools              Need money
                     Teach children about FAS
                     Get rid of labels

Prevention


                 General statements relating to FAS made by group:

             •    No cure
             •    Funny looking kids/ FLK
             •    Learning difficulties
             •    Pixie kids
             •    Low body weight
             •    Facial disorders
             •    Behaviour problems




                                       Group X

                 Central Focus: DRINKING DURING PREGNANCY

Subjects             Topics, issues and solutions from the Map bubbles

Alcohol              Make it illegal for mother to drink
                     Do tests every week
                     Someone else can get it for her
                     Lie detectors
                     Everyone in this town drinks

Posters              Showing how the baby could turn out
                     Effects of alcohol on your life




                                                                         23
                 General statements relating to FAS made by your group:


                 •   It’s dumb to drink when you are pregnant
                 •   How does it make the baby feel
                 •   Effects on baby/ slow/ dumb/ deformed
                 •   Why do people start drinking?/ Cool?
                 •   Why would a mother want to drink when she has a baby in her
                     stomach?
                 •   How much would a person save without drinking for a whole year?




                                          Group XII

                                 Central Focus: SUPPORT

Subject                 Topics, issues and solutions from the Map bubbles

Intervention            Follow through
                        Early intervention/ Elementary School or sooner
                        Need education support right away
                        Early structure development/ need repetition
                        Prevent habits forming

Education               Prevention

Foster Parents          Need realistic expectations
                        Need to avoid burnout
                        Cannot be taken advantage of
                        Need cooperation of The Ministry
                        Crazy
                        Too many children in homes
                        Kids are challenging
                        Can’t give to kids with difficulties
                        Need to lobby
                        Can work through Federation


Team Work               Important
                        All agencies/ schools/ doctors/ parents/ Ministry
                        Makes a difference in kids’ lives



                                                                                       24
Parents        Need support/ training/ expensive
               Volunteers/ Good Luck!
               Guilt
               Accountable
               Mothers and Fathers drank
               Recognition to parents of FAS kids
               Mentors/ live in with the families/ cheaper than foster homes
               Give money to single mothers instead of foster parents/ mentor
               Many are FAS/ clueless to other people
               Generational

Repetition     Important
               Same message
               Everybody work together

Assessment     Accurate
               Necessary for funding
               Act normal in so many ways
               They are not normal
               Did the Mother drink?
               Testing available
               Funding to test

School         Support
               1 on 1
               Teach aid training
               Stop sitting counting spots/ go outside and count birds
               Volunteers/ Union won’t let them
               Bus support
               In school for a large part of their day/ behaviour/ trouble/ expelled
               Not their fault
               FAS kids know/ “I’m dumb”/ easier road to play dumb
               Muheim has only 2 kids with teacher assistants


Disabilities   Inability to comprehend
               Lack of consequence
               Lack of memory
               Compulsive
               Rules don’t register
               Doesn’t go away
               Shoplifting
               Can’t instill a conscience into an FAS person




                                                                                   25
Funding                No money/ it falls apart
                       Bury it/ will cost less



              General statements relating to FAS made by your group:

              •     High risk/ high needs
              •     Should be illegal for Mother to drink
              •     Prevention chart with Mother



                                        Group XIII

                            Central Focus: INTERVENTION

Subjects               Topics, issues and solutions from the Map bubbles


Diagnosis              Early is necessary
                       Not a problem until school year
                       Problem as “Family Secret”/ taboo/ stigma
                       Only when kid becomes “bad” does it show
                       School funding/ need diagnosis
                       If FAS children were identified they would get support
                       Multiple diagnoses
                       Court/ repeat offenders

Assessment             Screening FAS
                       Follow-up with information/ assess/ plan

Consistency            Community
                       Interagency
                       Province
                       Hear over and over that children have been moved around

Preschool Quality      Very important intervention
                       May be only continuity in child’s life
                       Could be doers in intervention
                       Ties in with learning style and understanding
                       One constant but not recognized
                       Social services needs to know that this is a constant




                                                                                 26
Birth Control Education
                      Woman shouldn’t drink when she is pregnant
                      Not always a woman’s issue
                      Family issue
                      Fruit juice to celebrate pregnancy

Community            It affects us as a community
                     Need consistency
                     Chain of command
                     Liaison with other support programs
                     Interagency communication/ process/ all communities


FAS Parents          Time schedule is different
                     Don’t keep appointments
                     Lack of judgement
                     Young parent/ low functioning
                     Living in a family setting/ progression of independence/ reaches 19
                      removal/ out of care/ back into cycle/everything falls apart
                     Someone moving into the home as support may be invasive
                     Intergenerational
                     How can FAS parents help FAS child?

Foster care          Continuity is difficult
                     In and out of different cares
                     Children get lost in shuffle
                     Workers (everyone) changes

Prevention           Pregnancy Outreach Programme

Learning styles      What method of teaching allows children to show they retain
                     learning?



              General statements relating to FAS made by your group:


              •   Support and understanding are key
              •   Alcohol is culturally acceptable
              •   Frustration/ easy to give up




                                                                                      27
                                     Group XIV

              Central Focus: DON’T DRINK IF YOU ARE PREGNANT

Subjects            Topics, issues and solutions from the Map bubbles

Support             For family
                    For child
                    Mother
                    Counselling
                    From fathers
                    Nonjudgmental support

Parenting Programmes

Information         Not enough
                    CAP class
                    Other students

Drinking            Peer pressure
                    Wanting to belong
                    Drink to stage to get happy
                    Special occasions/ weekends/ birthdays/ anniversaries/ summer
                    Would the people in Church give wine to pregnant women?
                    Kids listen to their parents when they come home from bars

Advertising         Not enough ads saying you shouldn’t drink
                    “You should drink because you’ll have more fun”
                    When you are drinking you’ll go to Tropical Islands
                    Ads that make drinking look bad

Pregnant friends    Friends don’t want her to drink
                    Responsibility for each other
                    People will look at you funny if you drink when you are pregnant

Law                 Can the mother be in trouble for drinking?
                    Fetal rights vs. maternal rights

Alcohol             Portrayed as fun by the media
                    Ads should be anti-drinking/ make it look bad
                    Parental example
                    Warning labels on alcohol
                    How easy is it not to drink?
                    How much drink does it take to kill your child?


                                                                                    28
Foster parents           FAS kid is different

Diagnosis

Man’s role               Not just a woman’s child
                         Is he there?
                         Responsibility/ Does he want to take it?

Life of a child          What can happen?
                         Lifestyle
                         Can the baby be addicted at birth?
                         Does every child have the same difficulties?
                         Lifelong damage

Life of a child          Learning disabilities
                         Violent behaviour
                         Personality disorders



                  General statements relating to FAS made by your group:


                  •   Can FAS lead to alcoholism?
                  •   My aunt drank when she was pregnant and her 3 kids are fine
                  •   Assumptions
                  •   My Mom drank when she was pregnant with me and I’m kind of slow
                      in school, do I have FAS?
                  •   Myths
                  •   Challenges



                                          Group XV

                                   Central Focus: Support

Subjects                 Topics, issues and solutions from the Map bubbles

Implications             Cultural/ loss of culture as a whole
                         Racism/ seen as a native disease
                         Community/ effect on system as a whole
                         Strain on support systems
                         Further substance abuse/ further damage


                                                                                    29
Intervention   Early
               How to get it?
               Before they are entrenched
               In courts

Education      Educating community
               Lack of knowledge/ teachers
               Special programmes
               Prioritizing it as a problem

Education      Make it more visible
               Understanding
               Eradication/ need to help the people who have FAS
               Failing at something could help them with what they can do
               Positive path
               Education for pregnant parents
Medical        No cure/ keeps doctors out of it
               Not diagnosed at an early age
               Physiological problem
               Medical or health funding
               Cure?/ Is there a pill that will cause brain growth
               If was a cure there would be no incentive to stop drinking

Diagnosis      FAS undiagnosed
               Don’t know how many people have FAS
               Don’t always know who they are

Labelled       lazy/ stubborn/ trouble maker
               FAS “tagged”
               Real stigma
               Told they will never get a job/ are capable

Preventable    100% preventable
               Personal responsibility
               Don’t have the same compassion
               Seen as a moral disease/ self inflicted

Drinking       Some women drank during pregnancy and their kids are fine
               So it’s OK to drink
               Does not affect everybody

Expectations   Not always clear
               Supporters need to work with what there is
               Not expect to make changes



                                                                            30
Time                   Recognized fairly recently
                       Not so much time to study it
                       May be enough time/ no interest

Frustration            Unable to articulate
                       Need education about how to live with FAS
                       Treated differently
                       Realistically/ it is hard for them to learn
                       May look normal so there is an expectation for them

Frustration            Retention is nil
                       Literacy

Training               Skills training for support workers
                       Techniques for support and help
                       Skill/ to work with or support them

Barriers to progress   What works with some clients does not work with FAS
                       Slow progress/ no progress
                       Don’t get anywhere

Lifestyle              Contributes to FAS
                       Women take the brunt of it
                       Husbands don’t help
                       Isolated communities/ no support
                       Low income
                       Jail/ they get support




              General statements relating to FAS made by your group:


               •   Break the cycle
               •   Ban the sale of alcohol and cigarettes for 2 generations




                                                                              31
                                      Group XVI

                               Central Focus: THE BRAIN

Subjects             Topics, issues and solutions from the Map bubbles

Diagnosis            Needed for subclinical abnormalities

Support              Need to know how to support families

Art Therapy          Beneficial to this population

Research             How to measure safe amount of alcohol during pregnancy

Awareness            Posters

Education            System
                     Those with FAS/ behaviour/ problems related to this

Mental Health Workers
                    Could deal with stress, guilt and grief of Mom over FAS child

Training             Need education to know how to deal with issues
                     Need to know what resources are available
                     Need to know what is being done

Affected Adults      Need housing/ social skills/ education
                     Need independence/ employment skills


              General statements relating to FAS made by your group:

              •   Book/ The Broken Chord
              •   Cycle/ many generation perpetuate the syndrome
              •   Grief
              •   Guilt
              •   Dealing with generation 1 or 2 after diagnosis
              •   Are sperm affected?
              •   FAS/ alcohol use continued/ could disguise mental illnesses
              •   Prejudice
              •   Bullying
              •   Abuse
              •   Problems with attachment/ significant developmental markers



                                                                                    32
                                    Group XVII

                 Central Focus: FETAL ALCOHOL SYNDROME

Subjects            Topics, issues and solutions from the Map bubbles

Prevention          Education
                    Pregnancy Outreach Programmes
                    Strategies for Moms

Awareness           Posters
                    Let Moms know that alcohol will hurt babies
                    Exposure
                    Reminders

Education           Start in primary school before the kids start drinking

Diagnosis           Know that your problems are based on your mother’s drinking
                    Need quicker access to diagnosis in smaller communities
                    Intervention to break cycle
                    Recognition makes a difference in count

Knowledge           How women say “no” to alcohol




             General statements relating to FAS made by your group:

             •   Caused by drugs and alcohol during pregnancy
             •   Causes brain damage, behavioural problems and physical harm
             •   Babies are victims with consequences not of their choosing
             •   Failure to thrive/ lack of attention
             •   Misdiagnosed as schizophrenia
             •   Get rid of blame




                                                                                  33
                                      Group XVIII


The incidence of FAS occurring in children in Smithers is mild. They do not have the
Central Nervous System or Cardiovascular problems of acute FAS.

Diagnosis made with “Diagnostic Guide for FAS and Related Conditions, 1997”

               From: The Four Digit Diagnostic Code
                     FAS Diagnostic and Prevention Network
                     University of Washington, March 1997
                     Children’s Hospital and Medical Centre
                     4800 Sand Point Way NE, CH-47
                     Seattle, WA 98105
                     Phone (206) 528-5157
                     FAX (206) 527-3959


Common characteristics of FAS children:
      • Small heads
      • Wide set eyes
      • “funny” hands
      • small upper lip
      • no philitrim
 Also have:
      • small bodies
      • mental problems
      • all 100% hyperactive


Diagnosis is simple

FAS – alcohol is the causative factor, not chromosomal. Probably not caused by alcohol
damaged sperm.

Get the message to Moms before they get pregnant. The worst damage occurs when
women drink between 0-24 days gestation, before they are usually aware of the
pregnancy.

Heart and hand malformations are difficult to measure – the process is too invasive.

100% have attention problems. Desipramine, a tricyclic antidepressant is specific to FAS
– it allows children to store information time/sequence better.

This is a complicated problem.


                                                                                       34
There is new evidence indicating that an FAS mother who does nor drink may have FAS
daughters. Could it be long-term ova damage?


Computer Programme – “Solo Works”
             • sound, touch and information
             • multisensorial
             • helps FAS kids learn

The “Friend “ programme in Seattle works to prevent FAS. One friend on the streets
works with teens to help them avoid alcohol.


Teaching students with FAS/FAE:
       A Resource Guide For Teachers. Prepared by Special Programmes Branch. 1996.
BC Ministry of Education, Skills and Training.




                                      Group XIX


                              Central Focus: SUPPORT

Subject              Topics, issues and solutions from the Map bubbles

Education            Building self esteem
                     Helping them develop to their potential
                     Increase capacity to learn
                     Develop potential from young age
                     Teach caregivers
                     Need money
                     Parent education
                     Courses need to be open to everyone

MCF Existing Programmes
                    Resources to foster parents
                    Services for developmentally disabled


Foster Parents       Training
                     Opportunities
                     Respite
                     Schools recreation/ kids recreation


                                                                                     35
Foster Parents        Day programs
                      Support groups
                      Finding foster parents who will take FAS kids/ challenge for MCF

Adults with FAS       Community education around behaviour

Integration           Services/ schools

Employers             Job placement
                      Investments at this level do businesses good
                      Less shoplifting
                      Pivotal relationships

Rural Community       Isolation/ lack of services
                      More acknowledgment of problem here
                      We need to create local support systems
                      Identify then support


Schools               Upgrade teachers’ qualifications
                      No strategies in regular curriculum
                      No special courses available
                      Day programs for troubled kids
                      Behaviour sends kids outside school system
                      If they can’t keep kids it affects the parents
                      Recreation/ FAS kids cannot recreate as well

Good Testing          Early assessment
                      Provide intervention
                      Numbers may be under-reported
                      Alternative methods of teaching

Natural Parents       Prevention of FAS
                      Respite
                      Need to know even average people struggle
                      Adequate schooling
                      Frustration/ challenges
                      Infant routing changes/ stages
                      Teach routines to kids

Criminal Justice System
                      Housed in jail without learning
                      Exposed to other behaviours




                                                                                    36
Alcohol               Media
                      Sponsoring sports events
                      Hype vs. costs

Stigma                Label is heavy to carry
                      Label may bring services
                      Not wanting child identified/ parents have to admit to drinking
                      Fault
                      Misunderstanding/ misinformation

Barriers              Money for programmes
                      Advocating for particular programs
                      FAS/ new wave of program money requests
                      Competition
                      Limited resources

Families              Generations
                      Drink/ unprotected sex
                      More likely to drink

Services              Need to do a piece of something
                      Need to be integrated (e.g. Schools)

Support               No-one supports FAS
                      Usually parents get support going/ FAS parents cannot
                      No skills/ lack of understanding
                      Training
                      No charity group for FAS
                      Work for meaningful inclusion of children
                      Make the “here” a better place
                      Everyone benefits



              General statements relating to FAS made by your group:

               •   FAS kids/ repetition/ same mistakes
               •   FAS is preventable




       As each Mind Map summary was completed a draft was sent to the agency
concerned for correction and validation. When all agencies had replied this part of the
process was finished.


                                                                                          37
                         Final Summary Meeting
                                      The Meeting

        When the Mind Maps had been summarized and the validations sent in by the
participating groups a Final Summary Meeting was planned. A lunchtime meeting was
chosen in order to get as many people as possible to attend. One person from each group
was invited, but more wanted to come in fact from seventeen groups forty people
registered and thirty-six showed.

              The meeting room was prepared to encourage positive thoughts about fetal
alcohol syndrome issues and to help maintain focus on the goal. The Community Mind
Map was on display and colourful affirmation statements were posted around the room.
These statements came from the Mind Maps or from ‘ It Takes a Community’. The
statements were the following:


Statements from the participants:

       •          Communication is key
       •          Integrated Community
       •          Prevention
       •          Support
       •          Inclusion
       •          Community Based Holistic Approach
       •          Life Cycle
       •          Preventive Education
       •          Alcohol
       •          Drinking During Pregnancy
       •          Intervention
       •          Don’t Drink if You are Pregnant
       •          The Brain
       •          Fetal Alcohol Syndrome
       •          The Cycle Can be Broken
       •          Birth Control Education


Statements from “It Takes a Community”

       •            If disclosures are made without an informed and caring support
           network, the new awareness could precipitate a family crisis
       •            Equally important as prevention activities are intervention strategies
           that help families and communities now living with the presence of FAS


                                                                                             38
•             All children are heavily influenced by the conditions in which they
    grow up. A child, whether normal or challenged with FAS can have either a
    positive or negative upbringing
•            Resource workers coming to terms with the special needs of the
    community members sometimes look upon persons with FAS as teachers who
    challenge communities to rethink existing perceptions and remember old
    values and teachings
•            A key element of community healing is the understanding within the
    community that social and cultural wellness and progress depends on taking
    immediate action…
•            Preventing one child from being born with FAS more than earns you
    your life’s salary
•            Canadian and US health authorities recommend abstaining from
    alcohol during pregnancy and breastfeeding
•            Traditionally, pregnant women and nursing mothers led a healthy
    lifestyle with lots of physical activity and a nutritious diet
•            “Behold, thou shalt conceive a son; and now drink no wine or strong
    drink” Judges 13:7
•            In the early days and months, infants with FAS may develop more
    slowly than other infants. An immediate concern is some infants may have
    difficulty regulating basic functions such as sleeping and feeding
•            FAS is a thing that you can’t rub off or wear off. It’s something you
    have to carry with you for the rest of your life. It’s hard.
•            Fundamental to any intervention action is the belief that nobody sets
    out to damage their child on purpose
•            Parents, teachers and other professionals involved with the FAS child
    need to form a strong alliance to maximize the effect of their efforts and
    minimize the effects of the condition
•            Not understanding the nature and affects of FAS often leads to
    constant criticism, punishment, school failure and the downward spiral of
    isolation and low self-esteem
•            After about age 12, measured IQ scores for youth with FAS remain
    constant or decrease because their abstract thinking is slower to develop than
    their peers
•            As much as possible, the first priority is to provide a stable home and
    family life for the child
•            Children need to know the actual facts of FAS and how to prevent it
    before they begin to be sexually active and before they begin to use alcohol
    and drugs
•            The potential value of FAS knowledge that caregivers have to share
    cannot be overestimated – and sharing knowledge of strategies that work is
    one of the best ways that caregivers can help each other
•            The family and community are challenged to help children with FAS
    find a place in the community and world at large


                                                                                  39
       •           The people caring for persons with FAS need skills, knowledge, good
           will and support to be most effective
       •           Trying to parent a child with FAS without knowing the implications
           and how they play out developmentally is like trying to find your way around
           Toronto with a road map of Vancouver



       The most common topics of the Mind Map summaries were selected for the
subjects to be discussed at the meeting. This was done using a computer word count on
Microsoft Word by the following method:
                       • Go to edit/ Find
                       • In ‘Find What’ type in a commonly used word
                       • Find next
                       • Click here and count as many times as the word comes up
This method gave an accurate count for the most commonly used words in the Mind
Maps. The most twenty common words were used as the subjects to be selected from at
the meeting for discussion.

       These top twenty subjects were:
                     • Education/ Prevention
                     • Diagnosis/ Assessment
                     • Support
                     • Alcohol/ Drinking
                     • Community
                     • Intervention
                     • Foster Parents
                     • Parents
                     • Women
                     • Money /Funding
                     • Programmes/ Services
                     • Court/Justice
                     • Behaviour
                     • Cycle
                     • Communication
                     • Lifestyle/ Cultural
                     • Teamwork
                     • Stigma/ Guilt
                     • Research
                     • Employers/ Employment




                                                                                        40
       These subjects were written on flipchart paper and posted on the walls of the
Meeting room. Everyone was given three red spots to stick on their top three choices
from the twenty. The top five were then selected as the subjects for discussion at the
meeting. These were:

                      •   Education/ Prevention
                      •   Support
                      •   Money/ Funding
                      •   Diagnosis/ Assessment
                      •   Intervention


      Everyone chose their favourite subject and sat at a table to work with a group.
They were asked the following question:

       “What can we do, with respect to the given subject, to address the issue of fetal
alcohol syndrome?”
              It may help to think about these questions:
                     • What are our long-term goals?
                     • What are our short-term goals?
                     • What are some feasible actions that would work in this
                         community?

               And to consider:
               • The capacities of this community
               • Community events we can work with
               • The available people
               • The available people


    As everyone began the group work lunch was served.




                          Five Responses to the FAS question


                                        1. Support

•   Outreach programmes to rural communities
•   Mentorship programme
•   FAS/FAE family support worker to help with family/child long/short term planning
    “ongoing”


                                                                                           41
Community Service Improvements
• FAS/FAE respite to parents/ foster parents
• FAS/FAE training to parents/ social worker/ teacher/ employers/ government workers
  at BC Benefits
• Advocate/Association Committee be formed
• Mentoring programme
• Assistance in the justice/ legal system to FAS/FAE people (education)
• Educational options to FAS/FAE adults
• Support groups for adults with FAS/FAE
• Guidance in external brain – for life
• Support in Family home – access to services
                              - information
                              - behaviour technology
                              - training
                              - support groups
• School support – i.e. : teacher assistants
                   - training teachers
• Support needs to be – individual
                         - family
                         - school/ work/ community
• Special needs – disabilities
                 - re: funding by government
                 - FAS/FAE needs to be recognized




                                    2. Money/ Funding

•   1% of tax revenue from the sale of alcohol should go to FAS/FAE work
•   Reluctance to be diagnosed/ diagnosis should be community centred
       1. Determine first normal parameters for FAS/FAE
       2. Identify FAS/FAE in community – assessment/ diagnosis
                                                - difficult because of human rights and
                                                  political issues
•   Long- term goal – elimination of FAS through diagnosis/ assessment
                     - education kindergarten to adult
                     - FAE gets funding
                     - education/ research
•   Short- term goals – funding proposals
                       - neurological evaluation
                       - every child has rights
•   Support for those who have alcoholic problems


                                                                                          42
•   Pilot in Prince George – making better choices
                           - alcohol intake
•   “No new money – have to use existing programmes and money”




                             3. Diagnosis/ Assessment

•   What            - involve physicians
                    - others in community
                    - train people to spot and refer
                    - include schools
                    - develop a team approach/ community centred

•   How             - subcommittee of FAS to develop assessment team
                    - need an easy route to channel people through to assess
                    - be able to differentiate between FAS/ FAE

•   Capacity        - need various tools for different ages
                    - need various screens to get people/kids to help sooner
                    - we have educated front-line workers (schools/ D&A workers…)
                    - we have strategies for front-line workers when FAS suspected

•   Diagnosed       - may not mean the person qualifies for help
                    - don’t need to have a diagnosis to start getting help
                    - can be key to getting appropriate/ effective help
                    - other than physicians should be able to make diagnosis
                    - team approach to diagnosis
                    - FAS committee
                    - access to diagnosis – need to make it easier
                                           - for adults too
                    - acknowledge severity of FAE
                    - education of workers, especially school
                    - Dr. Moisey/ Child Development Centre/ FAS Committee school
                       educated front-line workers, create framework
                    - give Smithers Community Services Association strategies


•   Capacity        - we have a tool we can use, FAX to Reno to lady who produced it,
                       she will discuss it with us and we can keep doing this until we
                       are comfortable using it on our own



                                                                                    43
•   Short- term        - identify Doctor and network
                       - team development
                       - to make strategies available to all front-line workers
                       - train people working with FAS clients
                       - improve regular communications, re: resources, training &
                          strategy



•   Long- term         - existing framework that works easily for referral and assessment
                        - case conferencing so everyone involved in the individual’s life is
                          working on the same functional plan

•   Look into barriers for Doctors identifying as diagnosis

•   Learn from other communities

•   Identify key people in community to do particular skill assessment to minimize
    number of people referred to Doctor




                                      4. Intervention

•   Long- term         - educate to eliminate need for interventions
                       - foster parents, re: how to work with FAS clients
                       - aides – connect with supported child services to continue with
                          school and teacher assistants

•   Intervene at young age – grade 6/7
                           - sexuality
                           - learn about alcohol

•   Educate     - young FAS children to learn about FAS before they are adults
                - Healthy Babies/ Healthy Families pregnancy education

•   Adult FAS          - family support
                       - need to educate court system to recognize the basic premise that
                          FAS youth/ adults don’t have the same ability to know cause and
                         effect
                       - alternative justice programme




                                                                                          44
•   Supports for adult          - home support extension
                                - budgeting – show how to shop
                                - “external brain”

•   Short-term/ Long-term       - team approach to intervention
                                - “everyone on the same page”

•   Short-term           - foster parent education
                         - school funded programme
                         - sexuality and FAS teaching at the same time
                         - advocate for money for support
                         - person for alternative justice follow-up

•   Society needs to deal severely with alcoholism
                      - money to deal with root causes
                      - include a youth programme, e.g.: caught with alcohol must attend
                         effects of alcohol – alternative justice

•   Long- term           - user fee on alcohol
                         - designated treatment of alcohol related illness and disability

•   Relearning of parenting skills
                  - teaching in culturally appropriate ways
                  - mentoring of FAS adult parents in parenting
                  - leading with example/ role modeling about not drinking


•   Youth access to alternative entertainment – recreation
                                              - activities




                                  5. Education/ Prevention

•   Increase Awareness          - education programmes around affects of alcohol on
                                   relationships, health (personal), fetal health … starting
                                  early in primary school
                                - provide material/ background information to parents
                                  so they can discuss disruptive and detrimental effects of
                                  alcohol, again covering effect on fetus/ unborn child (for
                                  families where alcohol is already an issue, this is unlikely
                                  to be done, where importance of the previous point –
                                  school programme)


                                                                                            45
•   Increase Responsibility   - make people responsible for their drinking, e.g.: school
                                 teenagers drinking at school party – instead of suspending
                                 adolescents have them prepare a presentation on why
                                 he/she was reprimanded and again talking about what
                                 alcohol does to a person
                              - offer free safe places for kids to meet, Smithers has a lot
                                to offer for physically inclined kids (sports) however,
                                there is a need for a place for kids to just hangout with
                                each other

•   Involve kids in developing programme (prevention) for kids, e.g.: development of a
    travelling theatre show on FAS on alcohol/ development of pamphlets/ media blitz…




                          Summary of the Five Presentations

     The ideas generated by the five groups had considerable overlap and can be
summarized as follows:

               •   Prevention and support of FAS/FAE require a team approach

               •   Assistance is needed in the justice system

               •   Education about the effects of alcohol needs to begin in kindergarten
                   and continue through to adulthood

               •   There needs to be more teen programmes and youth must be included
                   in FAS/FAE education and the prevention process

               •   A portion of the revenue from alcohol sales should be used for
                   FAS/FAE education, prevention and support

               •   There needs to be support for families, foster parents, and individuals
                   with FAS/FAE by trained workers

               •   Mentoring programmes and pregnancy outreach programmes work
                   and should be continued and expanded

               •   More people need to be trained to accurately diagnose FAS

               •   More government funding must be made available for FAS/FAE
                   issues



                                                                                           46
                               Postcard Survey
       Four hundred postcards were made up and sent out into the community. These
were preaddressed and prestamped and asked the question “ What does fetal alcohol
syndrome mean to you?’ A sample blank postcard is shown in Figure 3 and completed
postcards are shown in Figures 4 to 8. They were given out by people who participated in
the Mind Mapping Sessions, by those in contact with FAS people and some were left in
conspicuous places to be picked up. This survey was regularly mentioned in the local
newspaper and on the radio. Of the 500 postcards distributed, 52 were sent back
complete, a 13% return.




              Figure 3. Each side of a sample blank postcard with the question’
                        “What does Fetal Alcohol Syndrome mean to you?”

       The results of the postcard survey have been summarized as follows:

•   Support of parents
       • More education for pregnant parents
       • Support for women who drink during pregnancy
       • Mothers needs to be alcohol and drug free during pregnancy
       • Partners need to stop drinking/ campaign with that message/posters “Alcohol
          can affect your unborn child, Dad”

•   Society problems
       • Drain on taxpayers
       • Drain on social support
       • Gives employment to support people
       • Strain on justice system
       • Drain on health care/ medical system


                                                                                      47
•   Society problems
       • Disruption in school
       • Home/ school/ society financial cost




                              Figure 4. Completed postcard.

•   FAS kids need
      • Structure/consistency
      • Help and understanding
      • Respect
      • To learn about FAS




                             Figure 5. Completed postcard.




                                                              48
•   Alcohol problem
       • Increase the cost of alcohol
       • Increase drinking age
       • Alcohol addiction is a problem
       • Make it illegal to sell alcohol to pregnant women
       • Destroys lives
       • Don’t drink at all
       • Less alcohol
       • “Ban the booze. Save our society”




                       Figure 6. Completed postcard.



•   Anger and resentment toward mother
       • Preventable if mothers did not drink during pregnancy
       • Not a very good mother
       • Irresponsible parenting
       • Sterilize mothers who drink during pregnancy
       • Alcohol indiscretion during pregnancy
       • Selfish of mother
       • Charges should be laid against mothers who drink during pregnancy
       • Your baby doesn’t have a choice to drink or not and it definitely isn’t your
           place to make that choice”
       • Social and moral overindulgence of uncaring or uneducated females




                                                                                        49
                            Figure 7. Completed postcard.

•   FAS kids
      • Lack skills
      • Look different
      • Have difficulty learning
      • Have mental/physical problems
      • Suffer
      • Are left out
      • Hurt for life
      • A lifetime of frustration
      • “Destruction of the life of an innocent”


•   FAS is caused by drinking during pregnancy


•   FAS is completely preventable


•   Families need
       • Resources
       • Respite




                                                            50
•   Problems
       • Guilt/ blame
       • Misunderstanding
       • Tragedy
       • Trouble
       • Sorrow/ sad
       • Struggle




                        Figure 8. Completed postcard.




•   Community need for
      • Information
      • Education
      • Intervention
      • Money to assist
      • Increased awareness on the affects of alcohol
      • Support for foster parents
      • More support systems
      • Money for support
      • More counsellors to meet the needs of FAS individuals


                                                                51
                                     Summary
        The Mind Mapping process was proven to be a very efficient and successful
method of surveying a community to determine what its members know and think about a
specific issue. In particular, with respect to the issue of fetal alcohol syndrome in the
Bulkley Valley a wide range of people from the community showed a good response.

        The problems encountered during this phase of the process were not major. One
flaw was the lack of representation of some groups and agencies in the community.
People who did not join in were too busy, this was the common reason for their not
participating. Two Mind Mapping sessions that were scheduled did not happen because
the participants did not show up. This means that some important areas of the community
were not surveyed. This includes the courts, the RCMP and the school system. There may
be ways to include these groups in a later stage of this process.

      Overall, the common sentiments of this community with respect to fetal alcohol
syndrome can be summarized as follows:

•   A team approach involving a strong network between all community agencies ,
    families and individuals needs to be developed in order to provide prevention FAS
    and support of those with FAS.

•   Education regarding FAS/ FAE needs to begin early in life and continue through teen
    years to adulthood, actively involving all participants.

•   There is an alcohol problem in this community and it must be addressed. There needs
    to be community education and information made publicly available to increase the
    awareness of the effects of alcohol.

•   Mothers and families need a lot of support and education during pregnancy to avoid
    the incidences of FAS/ FAE.

•   There is a need for more trained people to work with families and individuals living
    with FAS/ FAE.

•   Diagnosis must be a community responsibility as support for and treatment of those
    with FAS/FAE needs to be recognized without guilt or stigma.




                                                                                           52
                              Financial Statement

                                     Budget




     Total contract fee                             5000.00

 Advertising – job posting            53.54

         Babysitting                  30.00

    Film and processing               15.18

       Gift certificates              30.00

 Meals – breakfast, catered          333.20
         luncheon

           Postage                   295.32

Final report – paper, covers,         88.95
          binding

Seed money – for continuing
       FAS studies

  Stationery – pens, paper,
rolls of paper, postcard paper

*Wages – 175 hours @ 20.00           3500.00

           Totals                    5000.00        5000.00




                                                              53
                                       Budget Notes



* Wages for 175 hours:


                          Jobs                         Hours

     Fetal Alcohol Prevention Committee Meetings        6.75


      Final Report – compiling, writing and printing   23.25


                     Interim Reports                    1.00


                    Making Postcards                    8.00


   Mind Mapping Sessions – planning , conducting and   93.75
                     writing up

    Miscellaneous – phone, email, FAX, purchasing,     15.25
        paperwork, radio interview and budget

  Summary Meeting / Luncheon – planning and hosting    27.00


                      Total Hours                      175.00




                                                                54
                                Works Cited

1. Directory of FAS/FAE. Information and Support Services in Canada. 2nd ed. Prepared
      by the Canadian Centre on Substance Abuse. March 2000.


2. Grounded in Hope. Our Community’s Policy Response to Fetal Alcohol Syndrome. A
      Project of the Prince George Fetal Alcohol Syndrome Community Collaborative
      Network. May 1998.

3. It Takes a Community. A Resource Manual for Community-bases Prevention of Fetal
       Alcohol Syndrome and Fetal Alcohol Effects. Minister of Public Works and
       Government Services, Canada. 1997.

4. Leischner, Chris. Mind Mapping. Unpublished Document, Prince George Fetal
       Alcohol Syndrome Network. 1999.




                                                                                   55

				
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